Tracking Babies Along the 1-3-6 Journey The Tennessee EHDI Information System Yinmei Li, MD, PhD State Chronic Disease Epidemiologist Director, Surveillance, Epidemiology and Evaluation Tennessee Department of Health The mission of the Tennessee Department of Health is to protect, promote and improve the health and prosperity of people in Tennessee
Learning Objectives 2 To assess newborn hearing screening coverage, follow-up tests and intervention services for Tennessee babies To identify missed screenings, retests, or intervention and retrieve contact information needed for followup To provide data related support to the Tennessee Department of Health, Newborn Hearing Screening Program (NHS) and its partners 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Presentation Outline 3 TN EHDI-IS overview Data systems included in the EHDI-IS Data linkage process Reports generated from the EHDI-IS Where TN babies are regarding 1-3-6 goals 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
TN EHDI-IS Overview 4 CDC EHDI funded since 2008 Purposes To assess newborn hearing screening coverage, followup tests and intervention services for Tennessee babies To identify missed screenings, retests, or intervention; to retrieve contact information needed for follow-up To provide data related support to the Tennessee Department of Health, Newborn Hearing Screening Program (NHS) and its partners 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
TN EHDI-IS at a Glance Birth Statistical System Newborn Screening Database TN EHDI Information System Follow-up Data (Audiologists Other Medical Providers NH FU Nurses Early Intervention Staff) Public Health Data (Demographic Data, WIC, CSS, Immunization Registry) 5
TN EHDI-IS Flow Chart Birth Events Blood Spot/Hearing Screening Results Hearing Follow-up Results TEIS Part C Follow-up Data Birth Certificate Processing Newborn Screening Database Audiologists Medical Providers Birth Statistical System TN EHDI Information System Newborn Screening Nurses Follow-up 6 Public Health Data (Demographic Data, WIC, CSS, Immunization Registry) Reports
Data Systems included in EHDI-IS 7 Birth statistical system (BSS) Office of Health Statistics Direct access Daily updates 1,500-2,000 records/week or ~90,000/year No delay in data access 2-4 weeks after birth events 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Data Systems Cont. 8 Newborn screening records Real time, direct access 1,500-2,000 records/week or ~95,000/year No delay in data access No data entry delay when hearing results submitted on blood spot form Some delay if hearing results submitted separately 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Data Systems Cont. 9 Public health data Patients utilizing any health department services Base file generated from birth records Updated at any PH service encounter Immunization WIC Primary care services etc. Children Special Services (CSS) including diagnosis codes Updated demographic and provider info Used for follow-up Monthly updates since 2012 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Data Linkage Process 10 ~ 90,000 births each year base cohort for follow-up ~95,000 newborn screening records (one baby may have multiple records) Birth and screening records are linked on Screening form number Baby s medical record number Mother s SSN and baby s birth order and DOB range Baby s DOB Other variables used for assessing the match Birth order Birth time Child s and mother s last name Mother s resident or mailing address 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Data Linkage Cont. 11 For 2012 births 99.4% birth records linked to NS records Among non-linked records (551) 36% home births 46% died within 7 days of age (including 2 home births) 99.6% NS records linked to birth records Among non-linked records (317 unique children) 12% home births 65% not screened for hearing loss 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Data Linkage Cont. 12 Public health data Birth certificate number provided for most records Updated health care provider information Updated mailing address and/or phone number Diagnosis information - helps pick up some hearing loss cases missed by the NS tracking system Linked to selected birth records Without a hearing screening With referred hearing results Pending or LFU to diagnosis 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Data Linkage Cont. 13 Outcomes from public health data (2012 births) 4,000 + with updated phone number or address Picked up 6 HL cases for 2012 births (85 total) 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Reports from EHDI-IS Data 14 Summary reports on # in-state births # and % hearing screening # and % with hearing loss risk factors # and % referrals # and % hearing loss # and % receiving early intervention # and % lost to follow-up 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Reports Cont. 15 Summary reports grouped by Birthing facilities Primary care/attending physicians Demographic characteristics (maternal race, ethnicity, education, resident county or zip codes, etc.) Method and location of follow-up tests Age (at initial screening, diagnosis, and intervention) Formats: PDF; Excel; Crystal Reports flexible 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
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Reports Cont. 24 Individual reports Patient-level information on those who have not received initial hearing screening have risk factors need follow-up tests/diagnosis have confirmed hearing loss 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
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Reports Cont. 26 Data quality control reports: record-level details where initial screening methods are in conflict with screening results hearing test dates are in conflict with child DOB type/degree of hearing loss is in conflict with final diagnosis disposition codes are in conflict with diagnosis codes other potential issues 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
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Reports Cont. 29 Report updates Weekly updates Shared on a network drive NHS staff share appropriate reports with partners such as hospitals, audiologists, etc. 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
Where We Are on 1-3-6 Goals 30 Screening rate Percent screened within 1 month of age Diagnostic follow-up rate Percent diagnosed within 3 months Part C enrollment rate Percent enrolled within 6 months 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
31 Data sources: US Data: CDC EHDI (www.cdc.gov/ncbddd/hearingloss/ehdi-data.html) TN Data: TN EHDI-IS
32 Data sources: US Data: CDC EHDI (www.cdc.gov/ncbddd/hearingloss/ehdi-data.html) TN Data: TN EHDI-IS
33 Data sources: US Data: CDC EHDI (www.cdc.gov/ncbddd/hearingloss/ehdi-data.html) TN Data: TN EHDI-IS
34 Data sources: US Data: CDC EHDI (www.cdc.gov/ncbddd/hearingloss/ehdi-data.html) TN Data: TN EHDI-IS
35 Data sources: US Data: CDC EHDI (www.cdc.gov/ncbddd/hearingloss/ehdi-data.html) TN Data: TN EHDI-IS
36 Data sources: US Data: CDC EHDI (www.cdc.gov/ncbddd/hearingloss/ehdi-data.html) TN Data: TN EHDI-IS
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Many Thanks to 44 Fenyuan Xiao, TN EHDI-IS Epidemiologist Jacque Cundall, TN NHS Program Director Julie Beeler, Audiologist Consultant, Center on Deafness, University of Tennessee Knoxville Claudia Weber, TN Early Intervention System John Hutcheson, PTBMIS Coordinator Other partners: TN hospitals, physicians, and audiologists Parents and families CDC EHDI 13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida
45 The work presented was supported by cooperative agreement grant 5UR3DD000786-03 from the Centers for Disease Control and Prevention, National Center for Birth Defects and Developmental Disabilities. Its contents are solely the responsibility of the authors and do not necessarily represent the views or opinions of the CDC.
13 th EHDI Meeting. April 13-15, 2014. Jacksonville, Florida